Needing advice?

Hi I am new here and I was just curious I have been diagnosed with raynaud's for 2yrs now and I didn't really do anything about it until these past 2months or so because my symptoms were getting worse I was getting more sensitive to the weather changing and sometimes it came on for no reason. I did get an ana test done and it came back negative but I have heard that sometimes happens. My mom had lupus and died 15yrs ago due to her many complications. I think back then and where we lived the medication wasn't as good as we have today. I have heard of lupus being genetically linked do any of you have a family history of lupus is my question? Did you get diagnosed with raynaud's or something else before the diagnosis of lupus? And last did you get a false only to later get a positive? ... Just when I think back to my health and when get sick sometimes I literally feel like I could die. The last time I got that sick was a year ago I had a sinus infection and tonsillitis at the same time I could barely open my eyes the sun hurt my eyes so much tears ran down my face and I wasn't even crying and on top of it the migrates were the worse I have experienced it was a pounding headache.

My doctor also said that usually when you have raynaud's it come with another autoimmune disease. I have been experiencing joint pains, eye problems, always feel like something is stuck in my throat, when I get goose bumps they hurt especially on my legs and numerous other weird things I feel like it is all in my head at times it is so frustrating.

Thank you for any input☺


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16 Replies

  • Hi shari bags

    Welcome to this forum. I hope you find it helpful and you like being here.

    My Raynauds was diagnosed before my Immune illness as I'd had symptoms from a very early age. It can pre-date these illnesses by quite a few years. I've had great help with taking Adalat 20mg daily. There are lots of different drugs to try if you get side effects.

    I feel with your symptoms and strong family history that you should go to a Rheumatologist despite the negative ANA. It is possible to have lupus with negative ANA or what could happen is by the time you get to see one it could change and be positive. These illnesses can change quickly!. Certainly think about going if you keep developing new symptoms. Hope that's helpful and take care. X

  • Thank you misty14 for replying I am currently taking tiazac 120mg and I think it is helping with the raynaud's so far. But I think you are right I am going to ask my doctor to refer me to a rheumatologist I just can't shake this feeling like there more going on with me.

  • Hi shari-bags

    Keep us posted how you get on. Good luck. X

  • Hello and welcome!!!! I am sorry to hear about your condition. One thing that they my doctor stated is I could've had this since 1997 and never known it. It would've explained why I had the sudden weight gain, pain and fatigue and muscle swollenness like I had. My legs would constantly ache and swell. Everyone kept saying lay off processed food, salt ( which I don't use) but they were talking about fast food and restaurant food. Fast forward to 2015, my body shut down, they got the medication that I needed and today I'm a much better person. Been watching my diet alot more, they key I have found, NO CAFFEINE!! NO CHOCOLATE! NO ICE CREAM,Very Little Beef consuming, very little foods that cause inflammation, if you check Google for Lupus it will come up with lots of things, beware full disclosure about herbal supplements and medications, check with your Rheumatologist first, yes this is passed done by generation I had go back 5 generations to find my person who had it. I wish you well and hope this works. Ohio USA.

  • Hi Shari_bags. Welcome, and sorry to hear things are getting more difficult. From the sound of your symptoms, I'd say to read up about Sjogren's Syndrome.

    I have got it secondary to fibromyalgia and others but the symptoms you describe are ver

    As the others have said, ANAs are not reliable, so don't worry too much about that. Keep a diary of symptoms and how you feel, and share with your rheumy.

    Although there is no definitive proof, it is widely agreed that there is a genetic link in autoimmune conditions. You may not have the same condition as a family member but may share a genetic marker that makes you immunocompromised.

    I do hope you get some answers and relief soon. This is a great community, with lots of experienced people always willing to help, so ask away any time. If you need more information, Paul @ Lupusuk is very helpful and has a wealth of information available. xx

  • Misty14 I will keep you all posted ☺

  • Thank you Yogaqueen5 and thank you for your response I think a change of diet definitely helps!! I have cut out coffee and switched to matcha instead. I have noticed that I have a little bit more energy than I normally do. I could just sleep the whole day away. I have lost a fair bit of weight I use to be 135 and now my weight fluctuates 111-115 and I eat a lot so yeah. Everyone that has seen me this summer were wondering if I was sick or working out which I do but I lost the majority of it before working out. I don't do anything crazy just mainly 20min or even 10min depending on how I feel all at home. I will be sure to see a rheumatologist I hope I get a good one! It is funny you mentioned herbal because I love to try new herbal stuff and I was breaking out bad like huge blister looking pimples all over my face and now I am not taking as much my face has cleared! I was wondering how could I be getting adult acne now? When my face stopped breaking out since I was a teenager and now I am 27 and my face was terrible. I didn't even want to go outside.

  • Thank you LupieMani thank you for the responds I will definitely look into sjogren's syndrome. That is a great idea for me to keep a journal I have thought about it but never followed through with it. But you are right because when I do actually see my doctor I forget to let him know my concerns or I just don't want to bring it up because I feel so unprepared like a rambling mess especially when they ask well when did this occur I feel like I have to guess. I am truly grateful to have found this website there are so many questions I have wanted to ask. It is kind of lonely when no one else understands your struggles. I do have a wonderful husband that listens to me and my health concerns you can tell he tries to be there for me but doesn't total understand its capabilities.

  • I feel your pain, I have it all also. It does sound like lupus and sjogrens like mine. Hang in there and see a good doctor.

  • I was diagnosed with Raynaud's 20+ years ago. At that time, my doctor ordered all the appropriate blood tests to check for the various AI diseases. All negative. Fast forward to 2013 and joints started aching, fatigue set in, swelling of fingers and toes, sleeplessness and various other pains. I was tested again. All negative except for a barely positive 1:80 ANA (considered insignificant by most). I was diagnosed with seronegative RA and started on meds. Thankfully, a good med was found for me. Then in June of this year, I sought a 2nd opinion. Another ANA test was done. This time it is 1:640. Now Lupus or MCTD are suspected. As I think back over the years, I've had pleurisy, tennis elbow, SI joint dysfunction, nasal sores that I thought were cold sores, knee pain and swelling..... These diseases seem to take years to fully reveal themselves. Keep notes on all of the things that are new or unusual and things from the past that could possibly be related. Take pictures with your cell phone. Take these with you to every doctor appt.

    Incidentally, my daughter has also developed signs and symptoms of something autoimmune and has been diagnosed with seronegative RA. =( Waiting to see how hers progresses also.

    All the best to you.

  • Mimi1950 thank you for responding I looked into sjogren's and it does sound like a lot of the symptoms I am experiencing so it is a possibility!... I guess I will have to wait and see.. I will bring this up to my doctor though

  • Shareasmile thank you for responding I am sorry that you and your daughter have to go through this it is a terrible thing. I hope she will be ok no mother should ever have to watch their child suffer! But this is obviously hereditary for you. I will have to take pictures and keep a journal for sure because I do forget. That is another thing I do notice that has changed with me I get very forgetful... brain fog I guess and it is scary. When speaking to people I really have to think about what I am saying because sometimes I say words that make no sense and or sometimes I find my stumbling trying to find the words and that is so not me!... I actually went to the my doctor for shocking pains on the left side of my head it felt like an electric serge like a zap enough to get my attention.... any of you ever experienced this?? I wonder if it has anything to do with my memory.

  • Hello,

    I am sorry to hear that you are feeling poorly.

    In regards to your query about lupus and heredity; because so many genes are involved in the development of the disease (only half of which are inherited by a child from one parent with lupus), and because environmental triggers have to occur during the life of the individual to make the disease appear, it is not common for the children of people with lupus to have lupus. Most studies have shown that about 1 in 20 people with lupus will have a close relative (mother, aunt, sister, brother; less often father or uncle) with lupus.

    But if you are concerned, speak to your GP about having some blood tests and assessments or they can also refer you to a consultant.

    You can find out more about the symptoms and diagnosis of lupus by accessing or requesting this leaflet on our website

  • Thank you fabienne-jacquet for responding I will be reading this link thanks for the advice!

  • My mother had Dermomyositis ( not sure of spelling) and Sjogrens and primary billiary cirrhosis...all autoimmune. Unfortunately she died from complications. I have lupus, Sjogrens autoimmune hepatitis and fibromyalgia. So there is definitely a link. Both sisters suffer psoriasis and my grandmother had rhuemaroid arthritis.

    I had Reynaulds before I was diagnosed with other illnesses. Unfortunately it took years for a diagnosis. i blame the doctors. They thought I was depressed so everything got put down to that.

    Definitely write down symptoms,and try to get to see a rheumatologist. Good luck!

  • Thank you Jacqueline for responding I am so sorry you lost your mom and I truly feel your pain. I feel there is a link too because why would I have raynaud's?... I feel that autoimmune diseases are genetically linked somehow I may not have lupus but I know something isn't right. But tomorrow I will get an appointment with my doctor to see a rheumatologist. I understand your frustration with doctors I too feeling this way as if they are not listening.

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